What is it and what does it mean?
I’m not a medical expert, but I am an advocate for my own health and MS journey.
But this is what I know and understand, and at times I feel vulnerable being such an open book but I also find it somewhat cathartic good days and bad.
First up… HSCT is the ONLY procedure that has the capability of halting the progression Multiple Sclerosis in it’s various forms.
The earlier intervention is the better, the aim of HSCT is to halt the progression.
Symptomatic improvement is a “free gift with purchase”.
HSCT is documented, peer reviewed and backed by science.
HSCT will not *work* for everyone, some 10-15% of patients will either not respond or relapse.
I am one of the 10-15%, and one of the very few that publicly acknowledge it and have investigated “what’s next” after being determined a failure / non responder / relapser.
A short back story: I embarked on the HSCT path in 2014 under the supervision and wisdom of Dr. Denis Fedorenko, Moscow. Russia.
Initially I tolerated treatment well and showed and still show some signs of symptom regression – mainly cognitive.
However some 10-12 months after transplantation, some of my abilities declined – most significantly my gait and increase in hand weakness and my ability to work effectively full time.
Keeping Dr Fedorenko abreast of my concerns and in consultation with my domestic support team of GP / PCP, haematologist, and neurologists, OT and Personal Trainer, Physiotherapist it was determined that after an arduous 18+ months and several MRIs that something wasn’t right and new lesion activity was found.
Many HSCT forums tout the *recovery rollercoaster* say that regression can be blamed on illness or a UTI, but I knew instinctively it was more than that.
So appointments and calls and travel interstate to gain insight from other non biased considered and valued opinions was sought.
When my open minded Neurologist in Canberra, Australia confirmed that he really had no other option for me following a course of Mitoxantrone recommended by Dr Fedorenko and traditional DMDs would prove futile a trip back to Dr Fedorenko in Moscow who he himself described as the “best in the world” – aside from Dr Burt in Chicago (who’s statistics are only better due to a more restrictive acceptance criteria) quickly my decision, with my family was made.
Within days I had a date scheduled for 6 weeks to return to Moscow and have HSCT 2.0.
Like I’ve said before, chemo for cancer doesn’t work first time around for everyone and it needs to be adjusted and protocols changed and no one really blinks an eye because it’s convenient, often covered by the public health system or private insurance.
For HSCT and MS it just adds in geography and money. I won’t say that I’m lucky (lucky would not be having MS to start with) but I do have an amazing parents and sisters who all support me and band together every which way make it happen.
So what’s different this time?
The protocol, a more aggressive and a three phase attack.
How? Keep reading…
Statistically there’s an 80% success rate, with all 4 of Dr Fedorenko’s previously transplantations being successful. For me the alternative isn’t an option and he thought I was a good candidate.
Some have said they wouldn’t do it and commented on my posts and blogs, even if they have the resources it’s just not for them. OK. But me? I’m only 44, I’ve got shit I want to do and I want to live well and independently and work a little, play a little, travel more, have fun with my family, Schnauzer and enjoy life.
Even if I don’t regain much symptomatic improvement – I can be a realist, I’ll manage and ask for help – even though I hate it but it’s all better than the alternative and waiting for the inevitable.
God damn it, I’ve got to try and here I am.
Moscow, Russia. 3 years and 1 week since my first HSCT endeavour.
And now, the bespoke protocol that Dr Fedorenko has prescribed for me…
Please not that this is fluid, and I’m already 1 day ahead of schedule. It was predicted that stem cell collection would take 2-3 days due to previous transplantation and Mitoxantrone impulses administered in my home town earlier this year.
The administration of the 1 day Spinal / CSF infusion – Methotrexate 15 mg + Dexamethasone 4 mg is a third tier attack to top the Cyclophosphamide and Rituximab.
I was advised today that this Spinal / CSF infusion listed below has only been done approximately 100 times in the world!
4 days steroids / stimulation – 4 or 5
Neckline placement – 05.12.2017
1-2 days stem cell collection – 06.12.2017 maybe – 07.12.2017
1 day Spinal / CSF infusion – 08.12.2017 – Methotrexate 15 mg + Dexamethasone 4 mg
3 days chemotherapy (Cyclophosphamide 120 mg/kg+BCNU – Carmustine 300 mg/m*2 ) – 09.12.2017 – 11.12.2017
1 day for rest – 12.12.2017
Transplantation – 13.12.2017 (D-0)
8 days isolation (D+1+2 – D+9+10) – 14-15.12.2017 – 23-25.2017
1 day Spinal / CSF infusion – 25-26.12.2017 Methotrexate 15 mg + Dexamethasone 4 mg
1 day Rituximab 500 mg/m*2
Rest – 26.12.2017 – 27.12.2017
29 December = HOME!
Dr Fedorenko’s response to some of my questions?
Seems to be closer to a Myleo regime with 3 tier approach?
*Yes, closer to Myelo but very strong Lymphoablative.
Statistically 80% effective, but has been successful on all 4 prior Russian patients?
How long before you will consider 2nd transplantation?
*2-5 years nothing sooner, too dangerous.
I get that it’s not for everyone, but for now it’s right for me.
I hope this post gives you some insight and understanding.
Please forgive me if I don’t answer any specifically medically targeted questions, it’s not my area of expertise and I do not want to provide any false or misleading information. Ask your medical support team, not just on forums either – they’re often good for general advice but not for significant decision making. Do not substitute my advice or or experience or someone else’s instead of your own